So is the muscle twitching, the air hunger, the restless legs, the brain fog, the short-term memory issues and the flu-like symptoms, For the first time in eight years, shes walking for exercise and, well, for the thrill and joy of walking. I can do occasional spurts, but exercise of any intensity other than slow walk for more than a few minutes at a time definitely cause PEM for me. I am surprised by how angry I feel, not at Jen, but at the quirks of fate and geography that dictate whether we will receive help or no help at all. Thats one of the startling things about this condition. I dont know if you saw my post above about having an incurable condition called interstitial cystitis. Just like a kid has to take plenty of time to learn basic movements, so had I. I speed up the process by systematically decompose the complex movements in its very basic components and I separately trained these slowly. Jeffs publication of his story may have saved Jens life. Im very happy for Jen and anyone who manages recovery or remission, Im a tiny bit scared of losing her as one of our primary advocates. These people fought and triumphed. Who is the agent for Jennifer Brea? So so happy for her! Neurosurgeons advocating surgery of this nature are preying on ill people with ME who are desperate for cure. Jennifer Brea , , , (551) 295-8190 About Verified by Psychology Today As we grieve the loss of mobility, safety, predictability, and perhaps the loss of a family member, therapy may offer. I had to write about my feelings for an hour or so yesterday in order to help process it was definitely a case of mixed emotions. I do have all the other problems like chemical sensativitieson and on and on with all the other stuff. To think that something like an environmental toxin can (amongst other things) invoke an immune responsethat can (amongst other things) affect the strength of connective tissuethat causes (amongst other things) hyper-mobility in key spinal jointscompression of the brainstemand POTSwhich, in itself, leads to so many other far-reaching symptomsand internal compensatory mechanisms (which cause symptoms of their own, and have many other systemic implications). I had an Austrian physiatrist, who would probably be over 100 by now, and she was amazing. Lets not add to the confusion that this high publicity case is going to bring to us. After three surgeries in December 2018 and January 2019, all of my symptoms of ME (and POTS) are in remission. Im so happy to hear Jen is improving so quickly and doing so well!! 'Charismatic, smart and determined': Jennifer Brea with her partner, Omar Wasow. Not to mention the ability to take off of work. Later, the warriors son was thrown from one of the ponies and broke his leg. Even though its a spinal condition you dont need to have either I dont believe. I am in this fight until every person living with ME, no matter the cause, has access to diagnosis and care. (My words this is technically called asymptomatic localised or generalised hypermoblity) At the other end of our spectrum is hEDS, and in between falls a range of hypermobility-related conditions called hypermobility spectrum disorders (HSD) (my words these are symptomatic HSD), HSD are likely to be common. Surgery was the only option for Jeff and Jen, but its not for everyone. I also wonder if the long term bed rest could contribute to ligament laxity (?). And yet, when Brea was 28 years old, a Ph.D student at Harvard with a future as bright as her smile, she was struck suddenly by a fever of nearly 105 degrees. Maybe not probable but at least possible. If so, might I ask who performed her surgery? Nickel is an every single food, pretty much. The common thread between the two is choline, the precursor to the neurotransmitter, acetylcholine, which appears to be low and/or impaired in people with ME CFS. I am hopeful that someone will figure this disease out but realistically I dont think it will be in my lifetime. Some people with ligament laxity have improved usingthe Cusack Protocol. My daughter is still mentally recovering from the CCI and suboccipital craniectomy. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4648738/. Jens CCI surgery could be just another coincidence. Huperzine A caused tummy issues with me, as did mestinon. Next day, the stallion returned, leading a string of fine ponies. Oct. 27, 2020, 8:22 p.m. On Thursday, Oct. 15, Stanford's Medicine and the Muse hosted a discussion with Jennifer Brea, an academic turned myalgic encephalomyelitis (ME) activist and. and many of my autonomic manifestations, including POTS, under control. a thyroid nodule The body/being truly does want to heal, and its only a matter of knowing how to support that I can speak from very personal experience, having been erroneously diagnosed with another chronic incurable condition interstitial cystitis. It could be *part* of ME and for some a dominant part. Jennifer Brea is a filmmaker and activist. The ceremony is to be led by Henry Louis Gates Jr . Jennifers) aids recovery because somehow the procedure enables toxins to drain away from the spine and brain? Havent we been through this before? The first thing is that the tail becomes a bit longer but a lot more narrow so its volume goes down. I send you love and every wish that you will get help soon. Good luck on your ongoing search. Auto-correct said Jan instead of Jen! The money issue raises its head no surprise there really. On the contrary. However, not all neurosurgeons will be familiar with them. Her new health she says she will stay involved is a gift not just to her but to all of us. More potential for movement in the pelvic area that could cause destabilisation upwards into the spine and neck? I think the reason that I have problems emotionally with recovery stories is the same as the reason I cant watch inspirational stories on the news. FIND SUPPORT Are you patient look for social support or wondering how to get diagnosed? His tour was at least factually backed and supported by many state and national advocates with whom he worked plus ME/CFS Australia Ltd who provided him with a thorough briefing on the situation here and key influencers.. He is located in Brussels, and I have heard of occational home visits. Im good on interpreting what she says and linking tiny difference in how it feels with what she says about how things are connected. Found 20 colleagues at Drexel University. Sounds like I am like you Cort. It makes me wonder if their CCI/AAI is the result of the same infectious, autoimmune or inflammatory process that undergirds ME/CFS its just showing up in this particular manner. A procedure called AltasPROfilax, specialized chiropractic care and the Perrin technique is another possibility for those with neck issues. I am reminded of the damage that was caused in 2009 when after huge publicity was given to the retrovirus XMRV as the definitive cause of MEFS, many could not admit their mistake even after the retraction in the journal Science. This is such an obstacle that it almost makes me wish Id never heard of CCI! Structural issues arent the only way to potentially tweak the brainstem in ME/CFS; inflammation, infection or autoimmunity would probably do quite nicely, and some evidence suggests at least one of these may be happening in ME/CFS. I really dont know what to sayIt must be hard, indeed, to read some of these blogs. Agreed. BUT, I cannot exercise in any meaningful way (although walking is generally OK). It was only then that even started to look for anything and I still dont think they took me seriously until the antibodies were found in 2017 and I still feel like I am told your symptom severity does not match what we are looking at for this patient population. She can bend her hand flat on her arm. She was last spotted near Gate D37 at Miami International Airport on Wednesday evening about 3:30 p.m. Heavy headaches (feeling like the head is too heavy for the neck) and a bobble-head feeling. Whoops! I immediately also got a mixed feeling when reading about her recovery. So my personality, hopes and ability to enjoy life has decreased dramatically. She now helps lead a neurosurgery practice. The exray shows major arthritis from the first accident many yrs prior. So what if our bodies were not in hibernation but rather in something I would call pro-active hibernation? What is it that makes people not want to believe recovery is possible? Its great that this worked for her, BUT the very fact ME/CFS has had clustered outbreaks in many places makes it evident that this is some kind of infection. That helps removing waste out of the brain. The other thing that happens is that the tension in the brain part of the bag rises a bit. I think the avoidance aspect helped a bit with inflammation which will make symptoms exacerbate (and I can see this with vascular stenosis as well.. nothing like inflammation to make a brain more unhappy and even angry). I am absolutely thrilled to hear such wonderful news! When doctors could not figure out what was wrong with me, I faced intense medical skepticism and neglect. That said, my older family members all have significant forward neck posture. The most important thing for ME/CFS researchers now is to try and write a narrative that makes it appear as if they had. All possibilities to heal should be pursued. It was not tolerable and she was in a real bad way before she passed. During the surgery, her neck was hyperextended to intubate her. In wich country is it and what is physiatrist? Fighting the 'Plandemic' and Other Science Disinformation Campaigns. She has a tethered cord but that surgery does not cure CFSME either. Ive been taking it for over a year and it has been a miracle, not a cure, but I couldnt live without it since it keeps many of my symptoms, especially the cognitive dysfunction (e.g., short term memory problems and brain fog, etc.) Its been used to treat whiplash for years and has been used in EDS but is not well studied. They were different from the typical CCI/AAI patients. I still suffer with fatigue and PEM but I can at least manage my symptoms better with this supplement. Thankfully, Jen has made it clear thats she will remain active and I imagine be more active than ever. Jennifer Brea er en amerikansk dokumentarfilm filmskaber og aktivist. High oxidative and nitrosative stress can also damage the brainstem. Dr Perrins therapy is a specific type of massage The Perrin Technique which helps to drain toxins from the spine and brain. I also wonder if the long term bed rest could contribute to ligament laxity which does make one wonder if CCI/AAI is a more a risk for people with ME/CFS.. Thank you so much for this article, and care you have taken. Yes we more than ever need a good diagnostic test think, though, about how much controversy THAT will raise when some people with clear ME/cFS symptoms, onset and other tests, dont test positive which Im sure will happen! Would you share the Hyperzine product thats working for you? This lump is, over the years, slowly going down and awaycould it be that the body is either pulling bone away or could the body be the body adjusting the spine itself. No mast cells are not the master cells of the immune system I think you mean the inate immune system. I felt uneasy writing moderate as well. Its a definitely recovery if Jen can get away with 30-90 min of weight exercise, light or otherwise. Enteroviruses (the first viruses associated with ME) produce enzymes calledmatrix metalloproteinases (MMPs) that destroy connective tissue proteins like collagen, elastin and gelatin. One quick clarification: I didnt have overt neck symptoms until after my thyroid surgery. The encouraging news from Jeff and Jen (and now, hints of such from @mattie and @StarChild56) make the prospect of this being the solution all the more real. My uncle once told me about a warrior who had a fine stallion. Raquel (form Brazil), http://dysautonomia.com.au/fibromyalgia-syndrome/. Jen and Jeffs experiences are shining a bright light on a potentially very important, and until recently, little explored area of the brain the brainstem. I have witnessed first hand that even so-called experts miss other diagnoses and then diagnose someone with ME/CFS. I and others had surgery, some at CINN in Chicago, but I saw E Neurosurgeons to confirm. Sweet is a neurosurgeon in Cleveland, Ohio and is affiliated with University Hospitals Cleveland Medical Center.She received her medical degree from Georgetown University School of . They give me antidepressive pills I wont take. Also from SCIG and IVIG when autoimmunity involved. At one end is simple hypermobility which causes no symptoms, is not a disease and is a trait, like height. Wait times to get the surgery done can obviously be long. Using the old trained skill wont help you much and just confuses you. Not only is the CCI/AAI surgery they had unusual but they were unusual CCI/AAI patients as well. Jennifer Brea is an American documentary filmmaker and activist. So at the end of all this, despite having extremely high IgG and a very low NK count, I need to eliminate the possibility of CCI/AAI. When the fever lifted, she was left bedridden, dizzy, and despondent. But people should have support and pace through these studies and surgeries. Im going to try to walk away from this topic now. I am in the same place as debs. From someone on the Cusack protocol FB group: Hypermobility disorder is diagnosed when the symptoms are primarily joint related. Sadly, no matter the current confusion out there, MECFS remains a diagnosis of exclusion. Ann again you are right, Doctors are still in the mode of one-cause-one-disease.. The story of remission makes it even more clear to me than ever that we must fight for research to better understand the mechanisms underlying all of our cases. The surgery with a well respected neurosurgeon who does many of these surgeries helped with pain and some symptoms but did not help with CFS-ME. I'm now in full remission. Thanks so much Cort. low testosterone (possible sign of infection?) Already those who were caught up in the publicity of this high profile case are starting to twist their explanations of what happened. : Jennifer Brea, from her Medium.com blogs Thyroid Surgery And Aftermath In June of 2018, she had a total thyroidectomy due to Stage 1 thyroid cancer. Its going to be interesting figuring this all out! It took a particularly astute practitioner to diagnose the heavy metal poisoning, that put one severely ill patient on the road to recovery. It shows how variable this all is some people get helped with the opposite practice. Also, its always puzzled me why ME/CFS has different causal factors prior to onset in different people. Whatever kind of CCI/AAI she had, it was different from what hed seen before. Unlike Mestinon, it only needs to be taken once or twice a day. (08/07/2008). Can you make a correction to your article? If you have a diagnosis of ME or CFS, meet the Canadian Consensus (CCC) or International Consensus (ICC) criteria, and have already been assessed for a mechanical/structural craniocervical or spinal problem by a neurosurgeon, was the result positive or negative? Accepting our current status through a critical analysis of all claims to the contrary is the only way we can move ahead. It sounds to me like it turns out that Brea never had ME/CFS/Fibro in the first place. You need an individual practitioner (teacher in Alexander Technique lingo) though there are a few things you can do at home on your own. I know few of the above. I have found a lot of things of relevance and some of questionable relevance. Each of these could trigger a different (and less invasive) treatment approach. With all the other factors Jen and Jeff had the POTS, MCAS, the fact that Jen was taking several drugs that often help with ME/CFS my guess is that she would test positive on Rons test that their brand of CCI/AAI basically caused ME/CFS while other brands of CCI/AAI do not. Its the first comment of dejurgen with 6 replies of myself to it to break it up in smaller pieces. What is very different about the Ayurvedic training and Western Medical Doctor, is as you alluded to calling a symptom or collection of symptoms a definitive disease. Jennifer Brea was a PhD candidate at Harvard University when her mind started to fail her. Speaking of that I emailed Avindra Nath Jeffs story and today your story and asked him if he was looking at this in the NIH Intramural study and I gathered from his answer that he is. What I want to know is why arent you and Jen counting Dr. Rowes patients as having recovered from spinal surgery? Nor did Mattie the third person with ME/CFS to have recently undergone CCI/AAI surgery. There is a huge emotional adjustment that comes with recovery, especially after decades of illness, but for me that journey is a beautiful unfolding to becoming my new self. She made sure to film her worst times her film is cringeworthy, My CFS started 21 years ago. What Im really hoping, though, is that Jeff and Jens stories are pointing to a problem area that can be helped with other means. I know how you feel its hard not to feel that way after awhile but check this out Dana we didnt know anything about CCI/AAI a year and now Jen Brea is recovering. Among the first thoughts I had upon learning of Jens recovery was that if this is what it takes a rare diagnosis and neurosurgery if thats what it really takes to recover, I dont know that thats ever going to happen. She was traveling all around the world giving talks & lectures, going out for meals, consecutive days, & always looked vibrant & well, with an incredible upright strong posture, obviously no brain fog or PEM etc etc was puzzling to me? Thanks again for this coverage of an important topic. Im still waiting ?. I find that quite annoying, but hey. Is that possible? I think I would rather swallow a toxic chemotherapy drug than have a neurosurgeon fuse my head to the top of my spinal column. @jenbrea Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. Thank god i couldnt get out of bed. A neurosurgeon saw my MRI in Unrest and emailed me to say."yeah, that 'normal' MRI isn't normal." The path that led me to a diagnosis of craniocervical instability began with the observation that I had intracranial hypertension, a condition some clinicians believe is associated with ME/CFS. Ron Davis and to some extent Naviaux believes that in many cases this danger is long gone and hence the hibernation is wrong and should be reset. Slightly off topic, but just to let others know that diphenhydramine as per Dr Younger has made a huge difference to my cfs. Previously, she was a freelance journalist in China and East and Southern Africa. But mostly they make me want to keep on keeping onkeep organizing my efforts as best I canand, to have faith in what I feel internally and observe about myself, even if those things cannot easily be seen, diagnosed, described, or defined. Jeff anyone who have consulted with Dr Bolonesse help confused! EDS is a difficult and painful thing. I had to relearn doing thins as simple as how to stand up from a chair, opening a door and walk through it without bumping into it and how to do corners like walking around the corner of a table. Exhausted by trying to understand the definition of every word, the agenda of who is writing or publishing, etc. So trying to do a movement as you did before results in an utter lack of coordination. Your email address will not be published. food list I could not believe the foods I reacted to already & it goes undiagnosed, one girl she is allergic to her braces in her mouth she has the illness she is also Allergic to stainless Steel products knives forks spoons pots pans etc. Reason being that NEITHER Jeff nor I had overt neck symptoms before our surgeries. youve forgotten them or they are lost to you. Slowly, I moved from very severe, to severe, to moderate on the spectrum. With ME we can safely say that the range, strength and control of our skeletal muscles is below par. I will put that in the blog . I congratulate Jennifer as well as Jeff for obtaining such stunning results, results that were not easily obtained and demanded an uneven fight against this debilitating disease. I have been trying to find someone who does cranial sacral massage but since I live in Hilo, I cant find anyone who does it (at least correctly). I also use Lipid Replacement Therapy using an organic sunflower lecithin powder. Plotter of revolution @MEActNet. I appreciated your your emphasis on the importance of staying curious, given the wide variety of ways out of illness that some people are finding. I also agree that spinal fusion, especially such a highly specialized procedure as craniocervical fusion, would not be my first pick for treatment. It was very insidious and progressed with dysautonomias especially gastrointestinal dysfunction with anorexia. I hope that doesnt happen again. I was told I had anterior osteophytes on my cervical spine along with arthritis. Jen may be the only person some people feel they know with ME/CFS. why would treating the CCI heal all symptoms, surely some illness would still be remaining?. It is clear that there is more than one single cause of ME/CFS that leads to the symptoms that we suffer. amzn_assoc_region = "US"; Rheumatoid arthritis is a main cause of CCI. Has there been any research using Infra red light therapy , it is low cost, non invasive and the target areas are the Gut Microbiota, no medication is required. I wonder if a move is in store? Currently she is practicing Ayurveda and for the first time in 6 years she is getting improvements in many . I thought about this during the movie. Such waves travel to the entire jelly brain structure. I was always curious over her moderate/severe ME/CFS ?? It !must! It is very frustratingeven devastatingwhen people outside our community do not accept ME/CFS is a real illness. There are 21 other people named Liz Delany on AllPeople. Im luckily rather immune to that. Colby said they could find the suspected neurotropic viruses implicated in ME by this tried and tested method if samples were taken early in the illness but its no longer done. According to one neurosurgeon, my 2012 MRI (the self-same that my neurologist used to diagnose me with conversion disorder/hysteria) shows very clear signs of intracranial hypertension, most notably a pituitary gland that has been flattened into a pancake. Thatll kill you within days. Thanks Cort, but my legs are way above my head when I sleep, not the other way. Exactly Issue. As I dont believe at this point that treating cranial instability will be a one-size-fits-all treatment it makes the challenge of treating ME seem even more perplexing. But better not cured. Dr. Jennifer Brey, MD is an Orthopedic Surgery Specialist in Louisville, KY. Dr. Brey has extensive experience in Knee & Lower Limb Surgery. Many people have viral infections but never develop our disease. I built new model of ME/CFS through my own research. The symptoms matched. What was cloudy yesterday may become clear today. I had a neck MRI (not with flexing) and a barium swallow with neck x-rays. I suspect I hope Dr Perrin is on the right track. He found that 30% required a tethered cord release surgery either before or after their craniocervical fusions. I did it because that is how Jen described herself. She speculated and conjectured on Medium that she might fit the mold of EDS, but there is disagreement within that community (join and search hypermobility through the backlog discussion on the Cusack protocol group) over what constitutes an EDS diagnosis and what does a hypermobility spectrum disorder. A 2003 study suggested that reduced motor cortex output was reducing muscle recruitment in ME/CFS and causing fatigue. Hopefully we will get much more brainstem research. I can work now. I have much less energy, I have foggy mind, strong memory issues, my batteries last for 3-4 h (in a good day) and after that I just survive doing the mandatory things I need to. Cort, your question is a very good one about is CCI an autoimmune consequence. Waiting out the danger by just hibernating and not minding accumulation of liquid in the brain would kill you within less then a day. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root . But the other hand is less delightful. In 2011, I became suddenly ill after an acute viral infection. We stopped before looking deeply (pardon the pun) into venous stenosis in brain. Just talk to others of us. My daughters ligaments peeled off like paper. Best wishes to all from your fellow CFSer (16 years and counting; sometimes bedbound). Will be interesting to hear what Ron Davis, Don Staines, Naviaux & others think of this Recovery from ME/CFS due to corrective surgery alone! (A patient of Dr. Kaufmans reports that the extremely strong 3Tesla MRIsmay be the best and are more readily available. I have been following Jennifer Brea since her appearance and outstanding presentation given at the TED. Why you should listen. I have had M.E since developing Adult on-set Stills Disease in 2011. Am going through a difficult bout of neck pain right now, and it seems to be because of the variable barometer. I have issues and stenosis, but my spine doc doesnt feel surgery is best option for me. In my humble opinion, the theory and therapy offered by Dr Raymond Perrin is worth a second look and may fit with/explain Jennifers recovery story. Jennifer Brea: I have craniocervical and atlantoaxial instability.